Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
5 years Pain Free, now I'm back again (Read 2385 times)
BrianSteenstry
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
5 years Pain Free, now I'm back again
Nov 20th, 2014 at 3:56pm
 
Hey All... I'm back. I suffered mightily with clusters from about 1999 through 2009, with roughly 2 or 3 cycles per year. Then, 5 sweet awesome pain free, blissfully appreciative years. Now they are back with a raging vengeance (since the damn time change.) No sleep. Dead on my feet at work. I thought I was done with this. Blaghhh. Worst night ever last night, major shadows today. Anyone else gone 5 years pain free and then had a surprise devil at your door? This blows. Nothing changed in my diet, lifestyle, sleep, etc... Nothing. Just, BAM. Anyway, I'm back. I can't say I'm glad to be back, but very glad that you are still here. Any new developments I should know about since 2009 or so? Say a prayer for my wife if that's your thing; I go back to sleep, she does not.
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: 5 years Pain Free, now I'm back again
Reply #1 - Nov 20th, 2014 at 5:11pm
 
G'day Brian,
Its known for the beast to go into hibernation and then
for no rhyme or reason rear his ugly head. You could
try the vitamin D3 regime, it has an 80% success
rate of becoming pain free. you can find all the info
under medications and treatments on the main board,
123 days pain free "Batch"

Hoppy.
Back to top
  
 
IP Logged
 
BrianSteenstry
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 5 years Pain Free, now I'm back again
Reply #2 - Nov 20th, 2014 at 5:22pm
 
Thanks Hoppy, will do! That's new to me. There's hope then : )
Back to top
  
 
IP Logged
 
Don B
CH.com Veteran
***
Offline


What's another word for
Thesaurus ?


Posts: 104
Meriden, Ct.
Gender: male
Re: 5 years Pain Free, now I'm back again
Reply #3 - Nov 20th, 2014 at 5:25pm
 
Hey Brian, sorry you had to find your way back.
I have been one of the episodic guys only getting them every 5 years or so. Until I found this site I didnt know there were some who are chronic. This cycle for me is into the 4th month, usually they only lasted 2 months. I am dealing with slight shadows only after being on the D3 regimen for about a month. Hang tough brotha' PF days will come again !!
Back to top
  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: 5 years Pain Free, now I'm back again
Reply #4 - Nov 20th, 2014 at 7:53pm
 
Brian, there's always hope when it comes to dealing
with the  Smiley Us clusterheads are a tough
bunch of so an so's, and finding ways too outsmart the  Smiley is what keeps us strong.

Hoppy.
Back to top
  
 
IP Logged
 
James17
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 2
Re: 5 years Pain Free, now I'm back again
Reply #5 - Nov 23rd, 2014 at 7:44pm
 
Man I hear Ya. I had 3 years of PF living. Now I'm in the same boat as you. I feel for Ya. This is really a tough cycle.
Back to top
  
 
IP Logged
 
BrianSteenstry
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 5 years Pain Free, now I'm back again
Reply #6 - Dec 2nd, 2014 at 2:40pm
 
Thanks James, Hoppy, Don.... So good to know this site is still here. It's been a life saver... It's where I learned about Oxygen all those years ago, and everything else I know about clusters that I didn't learn the hard way. I'm a week into the D3 now with no changes yet. Among my worst cycles ever. Blah. Thanks for being here!
Back to top
  
 
IP Logged
 
Don B
CH.com Veteran
***
Offline


What's another word for
Thesaurus ?


Posts: 104
Meriden, Ct.
Gender: male
Re: 5 years Pain Free, now I'm back again
Reply #7 - Dec 2nd, 2014 at 3:45pm
 
Hey Brian. yeah, dealing with CH takes its toll for sure. I could no longer deal with it and learning about proper usage of oxygen to abort saved me !
I was not a fan of other preventatives for a few reasons, but would never question what works for another ! I was frustrated after just under a week of the anti-inflammatory regimen and still dealing with the beast. as if a few days of anything would help. think I saw others responding in a day or two and hoped I would be that lucky.

it wasn't much more than a week and only a few shadows lingered. Sorry you're still having a rough go; if you are not in touch with Batch, give him an update of how things are going and he may be able to help you along even more.

hang tough..   it's not easy, but you will get there !! 
Back to top
« Last Edit: Dec 2nd, 2014 at 4:21pm by Don B »  
 
IP Logged
 
Hoppy
CH.com Alumnus
***
Offline


LAUGHTER IS THE BEST MEDICINE


Posts: 1890
Perth WA
Gender: male
Re: 5 years Pain Free, now I'm back again
Reply #8 - Dec 2nd, 2014 at 4:56pm
 
Hi Brian,
When I started on the vitamin D3 regime I was in my
Spring cycle, it didn't stop the cycle in fact it sent the
beast crazy, but I persisted and when the cycle was
over (3mths) I carried on taking the regime. I've now
been pain free for the past two years.

Cheers Hoppy
Back to top
« Last Edit: Dec 2nd, 2014 at 4:58pm by Hoppy »  
 
IP Logged
 
BrianSteenstry
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 8
Re: 5 years Pain Free, now I'm back again
Reply #9 - Dec 3rd, 2014 at 10:22am
 
Great to hear, Hoppy! I'm not getting discouraged just yet... Batch just tipped me off on the pH thing, which I'm reading up on... So good to have this community. Looking forward to Spring. Thanks for being here  Smiley
Back to top
  
 
IP Logged
 
robertr
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 5
Re: 5 years Pain Free, now I'm back again
Reply #10 - Mar 31st, 2015 at 4:40pm
 
Hi Brian
I also have been pain free since 2009, but a new cycle started the end of January.  I have had cluster headaches for 30 years now-they come about every 5 years.  This cycle has lasted 7 weeks with some of the worst headaches that I can remember.  I thought that they were over until yesterday.(May have stopped the Verapnil too soon)  I had the shadow and a mid level headache that the oxygen knocked out in 5 minutes.  The thing that I find is that every cycle is so different, you need to keep trying to break the cycle--whether its predisone or depokte.  Good luck.
Back to top
  
 
IP Logged
 
bigoji
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 4
Re: 5 years Pain Free, now I'm back again
Reply #11 - Apr 15th, 2015 at 1:50pm
 
Hey Brian.  I can relate to your experience.  I was 4 years pain free until mid-January.  This bout has been a tough one.  It is my thing to pray and I will offer some for you and your wife.  I do hope you and pray you find some relief.  I am new to this site and I am glad that we have a place to support and assist one another.   

Best, Bigoji
Back to top
  
 
IP Logged
 
Batch
CH.com Alumnus
***
Offline


Control The Beast With
O2 & D3 You Must


Posts: 3708
Bremerton, WA
Gender: male
Re: 5 years Pain Free, now I'm back again
Reply #12 - Apr 16th, 2015 at 6:45pm
 
BrianSteenstry, James17, RobertR, Bigoji,

You might want to consider starting the anti-inflammatory regimen with 10,000 IU/day vitamin D3, Omega-3 Fish Oil, and the vitamin D3 cofactors: magnesium, zinc, boron, vitamin A (retinol), and vitamin K2.

Over the last 4 years, this regimen has proven effective for 83% of the CH’ers who start it.  To date, I estimate the number of CH’ers taking this regimen at 600.  I’ve also been running an online survey of CH’ers taking this regimen to prevent their CH.  The last data harvested from this survey indicated 83% of the 127 survey participants experienced a favorable response with a significant reduction in the frequency and severity of their CH from an average of 3 CH/day to 3 CH/week.  60 % of the survey participants experienced a lasting pain free response as long as they remain on this regimen.

I submitted an abstract reporting the results of this survey to the American Academy of Neurology in November of 2013.  They accepted it for publication and invited me to make a poster presentation at the 2014 AAN Annual meeting in Philadelphia, PA last April.  You can find the abstract printed in Neurology at the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The poster presentation was well received and I’ve had several neurologists get back to me saying they’ve suggested this regimen to their patients with CH and are seeing similar results.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Dr. Todd Rozen, MD, shown on the left in the photo above, heads the Headache Center at Geisinger Healthcare, in Wilkes-Barra, PA, He dropped by my poster presentation and told me he’s been suggesting this regimen to his patients with CH.  He’s seeing the same success rate but wanted to know if I had any idea why the other 17% failed to respond.

I’ve been pain free since October of 2010 when I developed this regimen and started taking it.   However, when the spring pollen drop from the big Alder trees started creating dust storms of pollen that coated my black pickup turning it gray, I began experiencing a strong allergic reaction...  I also fell out of CH remission.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Now you need to understand that as the vitamin D3 guru, it’s a bit embarrassing to admit the regimen that’s kept me pain free for over 4 years has failed to do so… 

I tried what I’ve told many others and that was to start loading doses of vitamin D3 up to 50,000 IU/day plus additional magnesium…  After a week of this, I’d lowered the frequency of my CH, but couldn’t stop them completely.  It was clear the flood of histamines from the allergic reaction was keeping vitamin D3, even at higher doses, from preventing my CH.

At that point the clue bird made a low pass and my good idea light came on bright and started flashing…  Treat the allergy!!!

I settled on Benadryl (diphenhydramine) as it passes through the blood brain barrier to block the histamine receptors in brain cells.  Benadryl doesn’t stop the flow of histamines, but it does block the allergic reaction and the resulting inflammation.

I started taking Benadryl as directed on the label at 25 mg 4 times a day, one tablet every 4 to 5 hours.  Within a matter of hours I experienced a marked reduction in allergy symptoms and by the next day I was again CH pain free.

Benadryl is a potent drug and it’s also a CNS depressant so don’t drive if you take it if at all possible.  If you do start a course of Benadryl try not to take it for more than a week at this dose.  If you do need to take it for longer than the first week, taper the dose.  I’m taking two a day.  I tried to stop after a week, but the CH came back so I’m on a taper until the pollen drop ends.

The time for an oral dose of Benadryl to reach a maximum serum concentration is around 3 hours and the half-life is 8 to 16 hours depending on age…  In other words, it lasts longer for senior citizens like me at 70 so two tablets a day are likely sufficient.

I added a 3-month course of vitamin B 50 to the anti-inflammatory regimen last year around this time at the recommendation of Dr. Stasha Gominak, MD, a neurologist in Tyler, TX.  She’s been treating her patients with sleep, chronic pain and headache disorder with a similar vitamin D3 regimen for over six years with results similar to the anti-inflammatory regimen.   

She noticed a strange phenomenon where some of her patients started falling out of remission after one to two years on her regimen.  The lab tests she usually ordered for her patients provided no indication why her patients were falling out of remission.  Then one of her patients called to say she had started taking vitamin B2 (riboflavin) and that the vitamin D3 regimen was again working just fine.

Dr. Gominak tested some of her other patients who had fallen out of remission and found deficiencies among the seven B vitamins.  Her solution was a shotgun approach with vitamin B 50 to address any deficiencies among the 7 B vitamins.  She also cautions not to take vitamin B 50 for more than three months as a few of her patients had taken it longer and reported the vitamin D3 had again stopped working.

The list of supplements and doses are shown in the following table.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The simple way to get these nutrients is illustrated in the following photo of the supplements by brand that I buy at Costco with the exception of the Super K that I order over the Internet from iherb.com or amazon depending on the price.  One Mature Multi tablet has all the zinc, boron, vitamin A (retinol) called for in the table above.  It’s also formulated with the seven B vitamins so should be sufficient to prevent any deficiencies.  Magnesium is the most important cofactor as vitamin D3 consumes it rapidly at a dose of 10,000 IU/day vitamin D3.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Vitamin K2 is important as it increases the flow of serum calcium away from soft tissues and arteries towards building bone mineral density.  Vitamin K2 has nothing to do with blood clotting so it can be taken safely by CH'ers also taking blood thinners.

The Super K that I take is made by the Life Extension Foundation.  It's a balanced formulation containing vitamin K1 and the vitamin K2 complex of menaquinones MK-4 and MK-7.  It's also easy to find formulations of just vitamin K2.

The vitamin B 50 and Benadryl are not shown.  I suggest starting the 3-month course of vitamin B 50 when you start this regimen.  The dosing instructions can be found on the first few pages of the following link:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

Most CH’ers respond to this regimen as shown in the following chart based on data from the online survey.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

As you can see, the majority of CH’ers respond within the first 10 days.  If you haven’t responded by then, start the 1-week course of Benadryl.  Many allergies are sub-clinical meaning no outward or obvious symptoms so you could be experiencing an allergic reaction and never know it except for the up-tic in CH frequency.

As always, keep your PCP and/or neurologist in the loop before starting the anti-inflammatory regimen.  It’s also a good idea to get the lab test for 25(OH)D if possible.

Don B, as you’re already past the 10 day mark with this regimen, I suggest checking with your PCP then start the Benadryl.

Hope this helps.

Take care and please keep us posted.

V/R, Batch

Back to top
« Last Edit: Apr 16th, 2015 at 6:48pm by Batch »  

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there
pete_batcheller  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!